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Adult survivors of childhood cancer are at risk for adverse effects later in life but may have limited access to information about their diagnosis and treatment. This knowledge is necessary to motivate them to seek medical follow-up and to report essential history to health care professionals.
To assess knowledge of adult survivors of childhood can...
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Background and Objective
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Methods
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Purpose:
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Citations
... 12 Multiple studies have highlighted knowledge deficits among survivors regarding their primary diagnosis, its treatment, and the risk of potential late effects. 9,13,14 Transitioning to the adult healthcare system, which requires patients to take more initiative and schedule appointments independently, may be hindered by this lack of knowledge or competence beyond the pediatric oncology setting. 12,15 In a Swiss study of young adults, approximately one third (36%) of survivors expressed a preference for doctors to communicate with their parents instead of them, and nearly one-third (28%) indicated that they do not consult a doctor or nurse when they have health concerns. ...
... 16 Therefore, empowering survivors for self-management and providing them with practical information about the healthcare system are crucial aspects of the transition process, enabling them to make informed medical decisions. 9,12,13,15,17,18 However, despite the availability of developed and validated transition readiness tools, and a feasibility study demonstrating their easy integration into clinical routines, these tools are not commonly implemented. 12,16 To enhance the understanding of the transition process and preparation from pediatrics to adult healthcare from the perspective of adolescent cancer survivors can contribute to optimizing current clinical practice and sensitizing healthcare professionals (HCPs) in pediatrics on the most effective ways to prepare patients and their parents for the transition. ...
Purpose
In Germany, children diagnosed with cancer survive their initial disease in more than 80%, and the majority will become long‐term survivors. Around the age of 18, survivors are transferred to adult healthcare. The transition can be a critical period in the process of care at which many childhood cancer survivors discontinue to participate in regular follow‐up care. Hence, the objective of the paper was to explore (a) survivors' attitudes towards pediatric follow‐up care and (b) their concerns regarding the transition process to draw conclusions for optimizing pediatric care and transition processes.
Methods
We conducted semi‐structured interviews with 21 adolescent childhood cancer survivors between the ages of 14 and 20. The survivors were recruited via a pediatric oncology department of a university hospital in Germany. Based on the principles of qualitative content analysis, a deductive‐inductive method according to Kuckartz was applied.
Results
Based on the interview guide and derived from the exploratory research questions, two key categories were generated: (a) Survivors' attitudes towards pediatric follow‐up care, which encompasses all formal and emotional aspects of survivors regarding follow‐up care, and (b) their concerns regarding transition from pediatric to adult healthcare, where hindering and facilitating factors for a successful transition occur. Our results show high satisfaction among survivors with follow‐up care. Nevertheless, they wish to be more integrated into processes and the organization of their follow‐up care. Most adolescent survivors do not feel ready for transition.
Conclusion
The integration of survivors into the organization processes and routines, and the promotion of emotional detachment from pediatric health care professionals (HCPs) are important to reduce concerns and uncertainties of adolescent survivors regarding the transition process and to promote subjective readiness for transition. To gain confidence in the adult healthcare, it is crucial to provide tailored education depending on individual requirements and needs and to build trusting relationships between survivors and adult HCPs.
... More frequently observed were knowledge deficits about late effects of cancer treatment, which were endorsed by survivors and/or caregivers in many of the countries/regions represented in our review, regardless of the country's income level. [23][24][25]32,36,42,45,46 These results align with earlier reports from HICs observing lack of awareness of past cancer diagnosis and treatment 56,57 and late effects 58 among CCSs. More recent studies suggest that disclosure of a cancer diagnosis is a standard of care in HICs, but knowledge deficits about late effects risks among survivors across the globe remain prevalent. ...
Most available data evaluating childhood cancer survivorship care focus on the experiences of high-income Western countries, whereas data from Asian countries are limited. To address this knowledge deficit, we aimed to characterize survivorship care models and barriers to participation in long-term follow-up (LTFU) care among childhood cancer survivors (CCSs) and health care providers in Asian countries. Twenty-four studies were identified. Most institutions in China and Turkey adopt the oncology specialist care model, whereas in Japan, India, Singapore, and South Korea, after completion of therapy LTFU programs are available in some institutions. In terms of survivor barriers, findings highlight the need for comprehensive age-appropriate education and support and personalized approaches in addressing individual preferences and challenges during survivorship. Health care professionals need education about potential late effects of cancer treatment, recommended guidance for health surveillance and follow-up care, and their role in facilitating the transition from pediatric to adult-focused care. To optimize the delivery of cancer survivorship care, efforts are needed to increase patient and family awareness about the purpose and potential benefits of LTFU care, improve provider education and training, and promote policy change to ensure that CCSs have access to essential services and resources to optimize quality of survival.
... Yet, less than 15% of survivors have access to genetic services [22]. Further, survivors and their PCPs are largely unaware of survivor's health risks, and overall adherence to surveillance guidelines is low [23][24][25][26]. These data highlight the need for childhood cancer survivors to be referred for genetic counseling and testing, which could reduce morbidity and mortality in this high-risk population. ...
Background
Germline cancer genetic testing has become a standard evidence-based practice, with established risk reduction and screening guidelines for genetic carriers. Access to genetic services is limited in many places, which leaves many genetic carriers unidentified and at risk for late diagnosis of cancers and poor outcomes. This poses a problem for childhood cancer survivors, as this is a population with an increased risk for subsequent malignant neoplasms (SMN) due to cancer therapy or inherited cancer predisposition. The ENGaging and Activating cancer survivors in Genetic services (ENGAGE) study evaluates the effectiveness of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic testing in childhood cancer survivors compared to usual care options for genetic testing.
Methods
The ENGAGE study is a 3-arm randomized hybrid type 1 effectiveness and implementation study within the Childhood Cancer Survivor Study population which tests a clinical intervention while gathering information on its delivery during the effectiveness trial and its potential for future implementation among 360 participants. Participants are randomized into three arms. Those randomized to Arm A receive genetic services via videoconferencing, those in Arm B receive these services by phone, and those randomized to Arm C will receive usual care services.
Discussion
With many barriers to accessing genetic services, innovative delivery models are needed to address this gap and increase uptake of genetic services. The ENGAGE study evaluates the effectiveness of an adapted model of remote delivery of genetic services to increase the uptake of recommended genetic testing in childhood cancer survivors. This study assesses the uptake in remote genetic services and identify barriers to uptake to inform future recommendations and a theoretically-informed process evaluation which can inform modifications to enhance dissemination beyond this study population and to realize the benefits of precision medicine.
Trial registration
This protocol was registered at clinicaltrials.gov (NCT04455698) on July 2, 2020.
... Given that only 63.3% of study participants were able to correctly report the treatment modalities they received, it is evident that treatment discordance is a prominent shortcoming among patients. This may be due in part to children often being too young to understand or remember the details of their disease, as well as intentional parental shielding [12]. Furthermore, it was found that Hispanic patients were 1.75 times more likely to incorrectly report the treatment modalities they received (lower concordance with EMR records) than their non-Hispanic counterparts. ...
Purpose
As pediatric cancer survival rates have exponentially increased in the past decade, with the vast majority surviving five years or more, the long-term impacts of treatment on the quality of survivorship must be explored. This study examines the effects of pediatric cancer treatment regimens on education outcomes among a demographically diverse regional population. The primary objective is to identify potential factors that may impact the educational and cognitive quality of life in this population.
Methods
Four hundred sixty-eight pediatric oncology patients diagnosed at age <20 between January 1990 - August 2019 and treated for cancer with radiation therapy at a large public or a multi-center private hospital in South Florida were identified. A novel survey available in English and Spanish was electronically distributed at least three times to each patient from August 2020 - July 2021 via email, phone call, and text message. Variables relating to demographics, treatment, cognitive impairment, and school re-entry were collected through the survey and electronic medical record review. Descriptive statistical analysis was performed.
Results
Of the patients, 10.5% responded to the survey (26 male, 21 female, two unidentified sex). The mean age was 8.9 years old (range 0-20) at diagnosis, 24.0 years old (range 8-39) at the time of survey completion, and 55.1% self-identified as Hispanic. Nearly one-quarter of respondents (22.4%) were unable to correctly identify the treatment modalities they received; Hispanic self-identifying patients were 1.75 times more likely than non-Hispanic patients to incorrectly report the treatment modalities received. One-quarter (26.5%) of respondents reported long-term cognitive deficits post-treatment, of which, over three-quarters (76.9%) identified as Hispanic.
Conclusion
This study illuminates patients' perspectives on their long-term cognitive impacts after pediatric cancer treatment. Given the diverse study population, ethnic disparities in post-treatment survivorship were explored. A substantial subset of Hispanic participants was unable to correctly identify their treatment regimen, and a disproportionately large group of Hispanic patients experienced cognitive long-term cognitive deficits, suggesting that ethnic disparities play a critical role in post-treatment survivorship. Further research on prioritizing educational intervention during and after treatment is essential to improving both the quality and equity of survivorship among pediatric oncology patients.
... To the editor, There is limited information on cancer disclosure to pediatric patients and their parents because most studies on the subject have been focused on adult cancer patients [1,2,3,4,5,6,7,8,9]. Many pediatric leukemia specialists are unaware of whether pediatric patients know their diagnosis. ...
... By the second decade of their life, more than 60% of childhood cancer survivors will suffer from at least one chronic non-communicable disease related to the treatment they had received or associated environmental risk factors, or both [59]. Moreover, globally cancer survivors are eight times more likely than their siblings to experience many of these severe or life-threatening health conditions [8]. ...
... CACS are at greater risk of morbidity and mortality during their lifetimes due to late relapses, secondary tumors, and the early development of non-communicable diseases. Several studies have emphasized the need for lifestyle changes, such as reducing or eliminating environmental risks, as being among the most important goals in the long-term follow-up of CACS [40,59,71,72]. As many cancer-related complications do not become apparent until the survivor reaches adulthood, the implementation of timely interventions in Environmental Health could be critical in preventing or ameliorating late treatment sequelae and their adverse effects. ...
Childhood and adolescent cancer survivors (CACS) are a high-risk population for non-communicable diseases and secondary carcinogenesis. The Environmental and Community Health Program for Longitudinal Follow-up of CACS in the region of Murcia, Spain, is an ongoing pioneering program that constitutes a model for social innovation. This study aims to present the program tools and protocol as a whole, as well as a profile of the incidence, survival, and spatiotemporal distribution of childhood cancer in the region of Murcia, Spain, using 822 sample cases of cancer diagnosed in children under 15 years of age (1998–2020). While the crude incidence rate across that entire period was 149.6 per 1 million, there was an increase over that time in the incidence. The areas with a higher standardized incidence ratio have shifted from the northwest (1998-2003) to the southeast (2016–2020) region. Overall, the ten-year survival rate for all tumor types was 80.1% over the entire period, increasing the five-year survival rate from 76.1 (1998–2003) to 85.5 (2014–2018). CACS living in areas with very poor outdoor air quality had lower survival rates. Furthermore, integrating environmental health into clinical practice could improve knowledge of the etiology and prognosis, as well as the outcomes of CACS. Finally, monitoring individual carbon footprints and creating healthier lifestyles, alongside healthier environments for CACS, could promote wellbeing, environmental awareness, and empowerment in order to attain Sustainable Development Goals for non-communicable diseases in this population.
... Owing to advances in multimodal regimens and supportive care, a majority of children diagnosed with cancer are now surviving (Youlden et al. 2020a). However, many childhood cancer survivors experience physical and psychological late effects as a result of the intensive treatments that cured them (Kadan-Lottick et al. 2002;Robison and Hudson 2014;Force et al. 2019;Lam et al. 2019). Potentially life-threatening late effects include recurrence of their primary cancer and developing new second cancers, due to the mutagenic consequences of chemotherapy and radiotherapy or genetic predisposition (Robison and Hudson 2014;Lie et al. 2015;Youlden et al. 2020b). ...
... Childhood cancer survivors are at risk of developing a recurrence up to 20 years after their initial diagnosis, and their risk of second cancer continues to increase with age, which has resulted in higher morbidity and mortality compared to the general population (Armstrong et al. 2009;Wasilewski-Masker;Liu et al. 2009). Survivors are also 5 times more likely to develop a new second cancer, compared to the general population, with elevated risk continuing into their sixth decade of life (Kadan-Lottick et al. 2002;Robison et al. 2014;Wilkins and Woodgate 2008;Turcotte et al. 2015;Youlden et al. 2020b). Adolescent and young adult survivors diagnosed with a second cancer have 7 times greater risk of death compared to their peers with only a single cancer diagnosis (Armstrong et al. 2009;Chao et al. 2019). ...
... Evidence-based guidelines on reducing survivors' risks of second cancer recommend several protective health behaviors for survivors of childhood cancer such as surveillance, sun protection, and avoiding tobacco and alcohol (Kadan-Lottick et al. 2002;Parker et al. 2003 Group 2009). However, many survivors still report a limited understanding of their subsequent cancer risks and do not follow precautionary recommendations (Kadan-Lottick et al. 2002;Oeffinger and Wallace 2006;Wilkins and Woodgate 2008;Armstrong et al. 2009;Vetsch et al. 2017;Chao et al. 2019;Signorelli et al. 2019;Knighting et al. 2020). ...
Objectives
Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors’ engagement with survivorship care.
Methods
We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.
Results
We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.
Significance of results
Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors’ anxieties about their future health.
... The pandemic and the fear of COVID-19 may indeed have increased feelings of vulnerability and psychological distress in this population and, consequently, their need for psychological support [27]. However, it is important to remember that the perceived risk reported in this study may be underestimated, because CCS may have had inadequate access to information about their cancer at the time of diagnosis and treatment [28]. This lack of knowledge about the medical history of CCS and the associated risks of late effects, combined with possible undiagnosed late effects, would make it extremely difficult for them to identify the potential risks and severe consequences of contracting COVID-19 [27]. ...
Purpose
During the COVID-19 pandemic, childhood cancer survivors (CCS) may have felt more at risk of having severe consequences of COVID-19 and therefore may have been more likely to defer their health care use. We aimed to assess the risk perceptions of CCS related to COVID-19 (perceived infection risk, perceived risk of experiencing a severe illness in the event of infection), and their forgoing of health care during the year 2020.
Methods
In December 2020, we interviewed through an online self-report questionnaire 580 5-year CCS participating in the French Childhood Cancer Survivor Study (FCCSS) cohort. Combining clinical and patient-reported outcomes, we studied predictors of perceived risks related to COVID-19 and forgoing health care.
Results
Overall, 60% of respondents stated that COVID-19 could have severe consequences for their health if infected. Survivors with a cardiovascular disease and those who felt more at risk of being infected were more likely to think that COVID-19 could have severe health consequences for them. Moreover, 30% of respondents seeking care declared they had forgone at least one medical appointment in 2020. Forgoing medical appointments was more common among CCS who reported a deterioration in their financial situation in 2020 and those who felt more at risk of being infected.
Conclusions
This study shows that a considerable proportion of survivors had forgone medical appointments because of the pandemic; forgoing care was more frequent among the most socioeconomically disadvantaged survivors.
Implications for cancer survivors.
This study presents data hitherto absent in the literature and suggests the need to develop telehealth to ensure appropriate long-term follow-up of CCS.
... 12 CCS, in particular those diagnosed at a very young age, may not always remember their lives before cancer and potentially have limited understanding of their illness and treatment. 13 Their parents may not have shared all details regarding their cancer experience with them and likely took responsibility for making medical decisions on behalf of their child. 13 This may mean that CCS are heavily dependent on their family's narrative of their cancer experience and their parents' medical knowledge gained throughout treatment. ...
... 13 Their parents may not have shared all details regarding their cancer experience with them and likely took responsibility for making medical decisions on behalf of their child. 13 This may mean that CCS are heavily dependent on their family's narrative of their cancer experience and their parents' medical knowledge gained throughout treatment. ...
Surviving childhood cancer and surviving cancer in adolescence or young adulthood may present with psychosocial similarities and differences. A clearer delineation for these 2 groups is warranted.
... However, there appears to be a knowledge gap among survivors of childhood cancer in receiving information related to their specific risks both before and during the pandemic. In fact, only 35% of survivors recognize that they could develop a serious health problem as a result of their cancer history (Kadan-Lottick et al., 2002). As health care providers and researchers, it is a priority that we find better ways to share knowledge with this population. ...
Background
Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2).
Methods
Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs.
Results
Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed.
Discussion
AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.
